"A Good Death": Role of Shared Decision Making and Palliative Care in Children with Cardiac Disease
Palliative Care; child; Decision Making; human; palliative therapy; shared decision making; letter; heart disease
We read with interest the article titled “A “Good Death” for Children with Cardiac Disease” by Moynihan et al. [1] The authors found that parents were less likely to perceive a “good death” when there was a lack of advanced care planning, poor pain control, surprise regarding timing of death, and cure-oriented goals of care. Further, those parents whose children had cardiopulmonary resuscitation (CPR) at end-of-life compared to those who experienced cessation of life sustaining therapies had a much higher odds of disagreeing with a “good death.”
End-of-life discussions and perceptions are challenging to decipher due to multiple reasons, including parental cultural and religious beliefs, implicit bias of medical caregivers and regulatory oversight. Often, parents may not realize the trajectory of their child’s condition until late in the clinical course, with one study showing this occurred at a median of 2 days prior to death [2]. Also, almost half of parents perceived their child suffered during the end-of-life period [2]. Therefore, honest communication about the big picture and early involvement of palliative care can improve parental understanding and expectations. Early involvement of palliative care has been shown to increase advanced care planning and reduce invasive interventions at end-of-life, including CPR and mechanical support [3]. This is outlined in the recent AHA consensus statement regarding use of palliative care across the life span of children with heart disease [4].
Tadros HJ; Gupta D
Pediatric Cardiology
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00246-023-03124-x" target="_blank" rel="noreferrer noopener">10.1007/s00246-023-03124-x</a>
Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
intensive care unit; Palliative Care; child; article; female; human; major clinical study; male; newborn; retrospective study; advance care planning; palliative therapy; medical decision making; pediatrics; artificial ventilation; terminal care; hospitalization; information technology; hospital patient; patient referral; life sustaining treatment; congenital heart disease; consultation; mortality; pulmonary hypertension; infant; hospitalized child; length of stay; pediatric patient; extracorporeal oxygenation; disease course; cardiomyopathy; heart disease; catheterization; myocarditis; myopericarditis; pericarditis
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.Copyright © 2023 Georg Thieme Verlag. All rights reserved.
Green DJ; Bennett E; Olson LM; Wawrzynski S; Bodily S; Moore D; Mansfield KJ; Wilkins V; Cook L; Delgado-Corcoran C
Journal of Pediatric Intensive Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1730916</a>
Palliative Care in Children With Heart Disease Treated in an ICU
cardiac intensive care unit; children with heart disease; comfort care; complex chronic conditions; end of life care; heart disease; pediatric palliative care
OBJECTIVES: Describe pediatric palliative care consult in children with heart disease; retrospectively apply Center to Advance Palliative Care criteria for pediatric palliative care consults; determine the impact of pediatric palliative care on end of life. DESIGN: A retrospective single-center study. SETTING: A 16-bed cardiac ICU in a university-affiliated tertiary care children's hospital. PATIENTS: Children (0-21 yr old) with heart disease admitted to the cardiac ICU from January 2014 to June 2017. MEASUREMENTS AND MAIN RESULTS: Over 1,000 patients (n = 1, 389) were admitted to the cardiac ICU with 112 (8%) receiving a pediatric palliative care consultation. Patients who received a consult were different from those who did not. Patients who received pediatric palliative care were younger at first hospital admission (median 63 vs 239 d; p = 0.003), had a higher median number of complex chronic conditions at the end of first hospitalization (3 vs 1; p < 0.001), longer cumulative length of stay in the cardiac ICU (11 vs 2 d; p < 0.001) and hospital (60 vs 7 d; p < 0.001), and higher mortality rates (38% vs 3%; p < 0.001). When comparing location and modes of death, patients who received pediatric palliative care were more likely to die at home (24% vs 2%; p = 0.02) and had more comfort care at the end of life (36% vs 2%; p = 0.002) compared to those who did not. The Center to Advance Palliative Care guidelines identified 158 patients who were eligible for pediatric palliative care consultation; however, only 30 patients (19%) in our sample received a consult. CONCLUSIONS: Pediatric palliative care consult rarely occurred in the cardiac ICU. Patients who received a consult were medically complex and experienced high mortality. Comfort care at the end of life and death at home was more common when pediatric palliative care was consulted. Missed referrals were apparent when Center to Advance Palliative Care criteria were retrospectively applied.
Delgado-Corcoran C; Wawrzynski S E; Bennett E E; Green D; Bodily S; Moore D; Cook L J; Olson L M
Pediatric Critical Care Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/pcc.0000000000002271" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002271</a>
Palliative care integration in pediatric cardiac intensive care units: A novel champion-based model
child; comorbidity; conceptual framework; conceptual model; conference abstract; consensus; coronary care unit; feasibility study; heart development; heart disease; hospitalization; human; morbidity; outcome assessment; palliative therapy; prognosis; rotation; simulation; total quality management
Learning Objectives: Integration of pediatric palliative care (PPC) into the management of children with serious illness and their families is widely endorsed by international organizations and experts in the field as standard of care. However, timely referral to, and integration of PPC into the traditionally cure-orientated Cardiac Intensive Care Unit (CICU) remains variable. Despite significant declines in mortality for children with cardiac disease, key challenges confront the pediatric CICU community with regards to prognostication and discussion of goals of care. In the context of significant comorbidities and technological dependence, lengthy hospitalizations and recurrent admissions as well as interventions risking significant morbidity, these patients and families would benefit from PPC involvement across the illness trajectory. Methods: We propose a novel, conceptual framework for palliative care integration into the CICU using expert consensus and literature review. Results: The model utilizes CICU-based, interdisciplinary "champions". Pediatric Palliative Care Champions (PPCCs) would be identified from within the CICU team and receive additional training through PPC courses and rotations with sub-specialty PPC services. PPCCs would perform 3 primary roles. First, their clinical role as a liaison aims to strengthen provision of primary palliative care in daily CICU practice and improve utilization of sub-specialty PPC by encouraging earlier involvement in more complex patients' management. Second, PPCCs will lead educational and communication training of CICU staff including simulation sessions, focused on eliciting preferences, discussing prognosis, providing difficult news, assessing hopes and worries, and making goal-based recommendations. Third, PPCCs will be integral in CICU operational aspects and quality improvement initiatives including the development of CICU protocols and standard operating procedures to enhance the provision of high quality care at the end of life. Conclusions: This novel conceptual model for integration of PPC into CICUs is designed for adaptability in the context of cultural, financial, personnel, and logistic needs and constraints unique to each institution. While the PPCC framework offers several unique advantages over other care models, barriers to implementation are anticipated. Further research is needed to investigate the feasibility, acceptability, and potential efficacy of this model on standard outcome measures as well as patient- and parent-reported metrics.
Moynihan K; Kaye E; Bailey V; Wolfe J; Thiagarajan R; Snaman J
Critical Care Medicine
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/01.ccm.0000551170.37983.db" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000551170.37983.db</a>
Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model
article; child; human; palliative therapy; skill; coronary care unit; multicenter study; staff; patient referral; clinician; hospitalization; total quality management; mortality; comorbidity; conceptual framework; consensus; feasibility study; heart disease; morbidity; rotation
Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented cardiac ICU (CICU) remains variable. Despite dramatic declines in mortality in pediatric cardiac disease, key challenges confront the CICU community. Given increasing comorbidities, technological dependence, lengthy recurrent hospitalizations, and interventions risking significant morbidity, many patients in the CICU would benefit from PPC involvement across the illness trajectory. Current PPC delivery models have inherent disadvantages, insufficiently address the unique aspects of the CICU setting, place significant burden on subspecialty PPC teams, and fail to use CICU clinician skill sets. We therefore propose a novel conceptual framework for PPC-CICU integration based on literature review and expert interdisciplinary, multi-institutional consensus-building. This model uses interdisciplinary CICU-based champions who receive additional PPC training through courses and subspecialty rotations. PPC champions strengthen CICU PPC provision by (1) leading PPC-specific educational training of CICU staff; (2) liaising between CICU and PPC, improving use of support staff and encouraging earlier subspecialty PPC involvement in complex patients' management; and (3) developing and implementing quality improvement initiatives and CICU-specific PPC protocols. Our PPC-CICU integration model is designed for adaptability within institutional, cultural, financial, and logistic constraints, with potential applications in other pediatric settings, including ICUs. Although the PPC champion framework offers several unique advantages, barriers to implementation are anticipated and additional research is needed to investigate the model's feasibility, acceptability, and efficacy. Copyright © 2019 by the American Academy of Pediatrics.
Moynihan K M; Snaman J M; Kaye E C; Morrison W E; DeWitt A G; Sacks L D; Thompson J L; Hwang J M; Bailey V; Lafond D A; Wolfe J; Blume E D
Pediatrics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2019-0160" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-0160</a>